Embrace the Journey

My blog offers a unique perspective, one filled with hope and resilience. I share my personal experiences, which are intertwined with my mother’s, who is my main inspiration for this endeavour. Together, we aim to provide a different, yet equally valuable, viewpoint that inspires and uplifts, inviting our readers to join us on this shared journey.

Unexpected Corners:

My mother’s life was adorned with affirmations. They were not mere words but a guiding light she held close. They decorated her diaries, notebooks, walls, and even the dashboard of her car. As a child, I often found myself drawn to them, even if their whole meaning eluded me. I would ponder them, trying to decipher their wisdom, and often smile in understanding. These affirmations have been a source of enlightenment and hope for me, shaping my understanding of life and its challenges. Now, what does this have to do with my blog?  Well, everything!

Affirmations are scattered throughout this blog; each holds a special place in my heart. Some are in unexpected corners, reflecting the state of my mind. Some are her favourites, and some have become mine. Some are in Māori, as whakatauki, and some are there to inspire, give courage, and strengthen me as I write about something deeply personal: the challenges and triumphs of living with a loved one with dementia. I aim to inspire and provide courage to those facing similar challenges, just as these affirmations have done for me.

One of my mother’s greatest attributes is her unwavering sense of humor, which will persist even in challenging times. One of her cherished expressions is, “Pai tonu ahau, engari kei a ratou nga he, pea!” – “I’m doing just fine; what’s wrong with everyone else?” And she’s absolutely right. What is wrong with everyone else?

This is where I begin my story …..

What is Wrong with Everyone Else?

"Personhood - It implies recognition, respect, and trust"

Tom Kitwood

In dementia care, personhood is a profound concept beyond treating the condition. It’s about treating people with dementia with dignity and respect in a way that helps them feel like they have a sense of who they are. Despite the loss of cognitive abilities, individuals with dementia are still the same person inside, and their essence (Mauri) should not be disregarded.

Caregivers, who play a pivotal role in this process, should avoid making people who are living with dementia feel helpless and confused, as this can undermine their sense of “personhood.” Family members who provide care play a crucial role in preserving the person’s essence. For healthcare professionals, cultural sensitivity is not just important; ensuring that the care provided aligns with the individual’s cultural views and practices is vital.

I was surprised to realise how overprotective I had become after her diagnosis. Why did I suddenly start doing things for my mother that she could do herself?

I want to share with you the profound impact of dementia on my mother’s life. Her fierce independence and unwavering strength of character are undeniable. However, the presence of dementia adds an unpredictable element to each day, making it feel like starting anew at any moment, anywhere. This may seem incomprehensible to those unfamiliar with the challenges of dementia, yet this is the reality of our relationship – one that continually requires understanding and flexibility.

Why do people disappear following a diagnosis?

I want to emphasise the need for understanding and support for individuals with dementia and their carers. It’s tough when people we love stop visiting or calling, and it’s equally challenging for my mother. We need to understand that these changes are not intentional but a result of the condition. It could be due to a lack of understanding, fear, or the desire to remember the person as they were. As a caregiver for a loved one with dementia, I observe the changes, but I firmly believe that the person remains who they are. It’s crucial to approach these changes with empathy, as it can genuinely make a positive difference in the lives of those affected.I will discuss this more later in this blog.

Looking after a family member with dementia is a complex and deeply emotional experience. As the condition advances, it becomes progressively harder for the individual to carry out simple daily activities. It’s important to remain patient and not to perceive their confusion or frustration as directed at you.

To become a good carer, one needs many skills, each complementing the others. I will first emphasise the importance of PATIENCE!

PATIENCE is a Virtue!

It’s not just about waiting but about how you act while waiting.

Patience is a powerful tool in caregiving. It enables you to adjust your caring strategies, pace, and communication styles to the specific needs of the person you care for. It also fosters a calm and empathetic approach, essential for creating a safe and supportive environment. Allowing yourself to be patient helps you understand situations before they become stressful. Importantly, it gives you a sense of control, allowing you to prevent them from happening again or be more prepared before they do, thereby reducing the feeling of being overwhelmed.

My siblings, family, and friends have always told me I am patient. I am not sure how true that may be, but if so, I have always believed I got my patience from my father, who, I can remember, was a very patient man. I was young when he tragically went missing out at sea with three of his companions, never to be found. The impact on our family was profound. But my mother, a woman of incredible strength and resilience, stepped up to the challenge.

Left with six children to raise, she worked tirelessly day and night to ensure we were fed and clothed. Her unwavering dedication, hard work, and deep religious belief in a higher being are the reasons why I never recall a single instance of us going hungry or missing out on anything. We always had what we needed, and she even managed to provide us with more. Reflecting on the word “patience,” I wonder now if my mother instilled this virtue in me.

Understanding the importance of patience in caregiving, it’s crucial to recognise that the actions of the individual you care for are a part of who they are and provide them comfort. This understanding not only benefits the individual but also positively impacts the carer’s mental health and well-being. For instance, at eighty-nine, my mother insists on helping with family chores, a behaviour we accept cautiously. This acceptance is critical to maintaining her mental health and well-being. However, it’s important to note that this understanding alone is not enough. We also need to take proactive measures to ensure her safety and well-being, which can help alleviate stress.

Patience is a critical virtue in these situations and can make a difference.